Weaving, spinning and general happy fibrery goodness from the Far North of Scotland

Category Archives: M.E/cfs

It’s been a pretty busy few days here what with trips to the dentist and Inverness as well as a whole heap of other stuff going on.

As always, my crocheting and knitting makes everything easier to manage; there been a lot of discussion recently about how therapeutic they are and I can certainly attest to that. Whether it’s filling the boring hours of car journeys, distracting myself while sitting in the dentist’s waiting room or giving me something to focus on during an especially stressful day I can guarantee that playing with yarn makes it better.

I first started knitting and crocheting about 10 years ago when I was working in mental health. One of the main things I enjoyed was seeing tangible results because after spending the day delivering talking therapy, it was hard to know if I’d said the right things, kept quiet when it was needed and generally supported clients in the right direction. So being able to whip up a hat over the weekend made me feel as though I’d actually achieved something.

Nowadays the thought of living with a chronic illness without the distraction of yarn is difficult to imagine. I belong to a few online support groups and frequently come across fellow sufferers really struggling with feeling useless, I’m very fortunate to not feel this way as all I have to do is look around our house to see the results of my crafting and there is the odd item living in other people’s homes too.

There’s also how knitting, crocheting, spinning and weaving adds to my identity. I’m not merely someone with M.E. and I can do stuff that doesn’t cause me to crash (much!). I have a set of skills I can share and nothing brings me more joy than seeing someone to whom I was also to pass on some knowledge to develop a similar passion for fibre.

Ok so this has been a pretty reflective post; I often do something called a gratitude list and something fibre related always features in my top five.

Last week I had a couple of days when, during a flare, I wasn’t able to do much due to pain in my hand. It really brought home, as these things inevitably do, what a huge part of my life all this has become. Fortunately it didn’t last very long and I’m back with my numerous Wips, projects and the usual cursing because I can’t find the right needles/cable needle/stitch markers!

We had a yarn room tidy up this week, Mr Weaving Heart came across some shelving that works really well for storage of said yarn so it motivated me to sort everything out. Our back room now looks fabulous and is my favourite room in the house because it’s so bright and cheerful with everything within reach.

This makes me a very happy yarner!

You might spot the edge of a Sophie’s Garden at the bottom, this is my new stool made from a kit I was given for Christmas; this is also something I love. It’s a kit you can buy from Wool Warehouse and was a very simple make, the instructions are online via Look at What I Made and they include photos, tutorials and everything you might need if you’re a crochet novice.

Isn’t it cute? I’ve had another kit finish too, again a kit from Wool Warehouse, this time an Attic24 one for a jolly chunky bag; I had visions of me using it at the Edinburgh Yarn Fest to fill with lovelies but I think it’s a little too easily dipped – not that there will be lots of pick pockets there but you can never be too careful…

All this colour really helps my mental health, I can get low, especially at this time of year, and being surrounded by yarn and brightness is super soothing.

Ok, so finally, I have my new crochet square blocker to show off; another make by Mr Weaving Heart, it’s just right for blocking all the squares I discovered hiding behind the sofa when we did the sort out. Now I have to get over my complete resistance to attaching them all together. I hate this bit, I love granny square blankets but the thought of either sewing or crocheting all those squares leave me cold. Even with the fantasy of how gorgeous it will look when complete, which usually works to force me though the toughest project, fails utterly in this situation.

It been a while…we went away for a couple of weeks over Christmas and I’m still recovering. The world down south is so fast, noisy and busy! Everything that used to appeal to me, like the shops and places to eat out now hold no such joy, I just find the choice stressful.

We didn’t visit England for those kind of things though, we visited family and it was lovely to catch up with some relatives we haven’t seen for quite a while. It’s good to be home and I’ve been enjoying the peace and quiet as well as our comfy bed.

At the beginning of 2017 I started a Beekeepers Quilt, made from lots of little hexipuffs, the plan was to make one a day for the whole year. I lasted until June when somehow my focus wavered and the project got hidden away in my pile of shame with all the other unfinished WIPs. So come 2018 and I unearthed the bag full of puffs and had a wee play with them. They’re so cute, I began to sew some together and it was lovely to remember where the yarn came from for each one.

So my plan is to gradually assemble the blanket – I have enough for a small one – then decide if I want to add some more or just leave it as a little one.

To be honest, I’m not sure where it will live once finished; usually blankets are thrown over the sofas here but we have two furry and often slightly muddy dogs who love to snuggle up in them. This blanket won’t be washable, well not easily anyway, plus some of the yarns aren’t that robust so it’s a bit of a quandary. I suspect this is one of the reasons I got a bit un-enamoured with it.

Right onto some other projects: This year I’m making a temperature rug; there’s no pattern as I’m just crocheting a row of single crochet every day in a colour corresponding with the daily temperature outside.

You can see that ‘cloud’ is missing, it’s currently attached to the blanket as it was a chilly 0 degrees today. I’m using good old Stylecraft Special, but Aran weight with a 4mm hook to make a slightly denser, thicker fabric that will hopefully be suitably rug-like.

I don’t think we’ll be seeing anything other than blues for a while yet.

Before I go, I’d like to briefly show you the cushion cover I’ve just finished. Last year I thought it would be fun to participate in a fibre Advent Calender, I found one by Siobhan Crafts so had an exciting little package to open every day. The fibre was gorgeous, it had a pink theme and was a mix of mini-batts, locks, rolags and pencil roving. I spun each day onto two bobbins and plied them last week.

The package for the 24th contained a very cute orifice hook with a little sheep on the end as well as some other goodies. It was very good value as a heap of work must have gone into the dyeing and fibre prep., I think I paid around £28 for what turned out to be well over 200g as well as some other bits and pieces. I’d really recommend next years if you’re a spinner.

Attic24 is currently running a CAL (crochet along) in a kind of feather and fans pattern and I thought it’d would be perfect for my yarn as the stripes would show off the different colours in my skein. I’m super pleased with my little cushion, I had just enough yarn and it goes super well with the bright colours in our back room.

Warning: this post contains photos of a shocking quality, this blog takes no responsibility for these, I completely blame my cr***y phone camera and deny it had anything to do with poor lighting choices, shaky hands and lack of patience. Please continue at your own risk.

I stumbled upon a lovely yarny-type place last week. We made an impromptu visit to Aberdeen that involved passing by Auld Mill Alpacas, a small holding near Elgin.

It’s a wee gem buried in the Moray countryside with a fairly large herd ( flock?) of alpacas living with various chickens, dogs and a couple of humans too. Carol and John have run it for about six years and breed alpaca for sale as well as running a small on-site and online shop.

We were warmly welcomed and ushered in for a cuppa; Carol has heard of Weaving Heart and we exchanged weaving stories and traded tips. They make handwoven scarves and throws with yarn spun from the alpaca fleece. The range of natural colours is beautiful and they try and ensure that everything is labelled with the name of the alpaca the fleece came from.

Finally I had a wander round the shop, in a shepherd’s hut; it’s perfect with a great selection of yarn, fibre and handmade goodies.

Needless to say I managed to acquire a few additions to my stash while I was there. Something I really liked and I think is unusual was some mill-spun core spun yarn. I’ve never seen non handspun yarn like this and I took a large bump home with plans to use it as weft in a rug. In the photo below it’s on the bottom row in the middle, isn’t it gorgeous? I’d be quite happy just cuddling it all day.

If this all sounds like I’m pushing you to visit, if you get chance, go! I was very pleasantly surprised and the alpacas were beautiful in their elegantly haughty ballet dancer way.

Right health update: bleurgh, life can be truly awful with ME sometimes. It’s not often I moan (??) (maybe I should leave you to decide that) but I just a little fed up with really really wanting to do stuff (like weave) and just can’t. It’s a bit rubbish getting up in the morning only to have to lie down, wait for the drugs to kick in and then see if I can manage to actually sit up so I can crochet a little. It’s tough. I do maintain a positive outlook, I am super fortunate to have a safe, warm home and wonderful people in my life but jeez it gets tedious. That is all. Speaking of crochet, I have been hooking a bit (and running out of Netflix to watch too, nightmare), here’s a little selection.

I met with my MP this week to ask him to sign a petition requesting an inquiry in the abuse of people with ME (PWME; you can find more information here).

Unlike our previous MP, he didn’t sign but fobbed me off by saying he was already ‘signed up to something to do with ME’.

However, this isn’t the topic I want to write about today, rather I’d like to discuss a common response from health professionals and, indeed, my MP. When certain people hear I have ME, instead of listening, they proceed to tell me all about it ending with ‘recovery is possible you know’ or words to that effect. Recently I’ve heard this from my practice nurse, my MP and ﻿some well meaning acquaintance.

Let’s have a wee look at this, according the research, around 5% of PWME recover. Yes, you read it correctly, a 5 measly % (I think it’s higher for young people however). The term ‘recovery’ is up for debate too; within the ME community, it’s widely believed that ‘remission’ is a more realistic outcome as those who have been described as recovered aren’t back to full health, just better than they were.

So why the insistence on reinforcing recovery?

Well. Firstly I think it’s easier for people to cope with; living with ME can be seen as a pretty miserable existence: not working, low income, limited activity, isolation, chronic pain etc etc. So it’s much more comfortable for you to view this as temporary.

I’m comfortable with it being permanent however and by focusing on what ifs devalues my life as it is here and now. Yes, it may not be the life I’d wished for but it’s a fulfilled and generally content one. Living with chronic illness has taught me patience, compassion and empathy in levels I’d not experienced before. I’m able to sit quietly with myself quite comfortably and whilst I may not be achieving things in the way our society values, I’m able to create beautiful things and pass on those skills when the opportunity arises.

Another reason for the recovery agenda is the infuriating insistence on being positive and because PWME are desperate for ME to be recognised as a physical illness we worry that presenting as anything other than happy, joyous and free will be used as evidence against this. So we smile sweetly and nod ‘yes, I could wake up tomorrow and be fine‘. Not ‘believing’ in recovery isn’t being negative, or even realistic (although, for me, I’m past the magical five year point when, for even Pollyanna’s, recovery is extremely unlikely). It just is and it minimises the reality of how life is for us.

I find all of this very tricky to write, back in the day I used to be pretty literate but I reckon what with the combination of brain fog and some neurotoxic medications my i.q. has about halved. Fog really is the way to describe it, it’s like wading through a thick peasouper in there where words are hiding and my train of thought skips away.

Right enough of that, here’s a little crochet catch up. I’m still hooking frantically and have made progress on all three projects.

Lilliana is looking very pretty and I’m up to date with her at part 7.

Similarly with Atlanticus, he’s unintentionally mirroring Lilly’s progress and is also at part 7

However, excitingly I even have a Finished Object: meet ‘A Spicier Life’ blanket which is a crochet sampler basically, having different stitches every few rows. The only issue is that this causes differences in tension so the edges were very wonky until the border was added; it’s still a little wavy but once you’re snuggled underneath hardly noticeable. I quite like it, the Nurturing Fibres Eco Cotton I’m working with for the other projects has simply ruined me. This is in good old Stylecraft DK so will wear and wash well, I see it becoming a trusty doggie blanket. Needless to say I’ve already a new WIP in mind…

I’m missing walking right now. Autumn used to be the kind of year we’d go on really long yomps in the Highlands; the weather was cooler, the midges were starting to die off and the colours of the bracken, heather and hillsides are beautiful. If you’re lucky you might get to hear the deer rutting or even catch a glimpse of them.

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But instead of venturing into the great outdoors, we both watched Unrest, a film about M.E.

It’s a difficult and powerful film; Jennifer Brea, the film maker, doesn’t flinch from showing us herself at her most ill and vulnerable. As someone who has lived with this illness for over five years now, with little hope of recovery, I identified with her efforts to try anything, no matter how crazy, to try and cure herself. For me there’s been supplements, diets, a certain well advertised and expensive ‘cure’, as well as consulting various specialists from private doctors to herbalists, but the bottom line is, until we understand what causes M.E, we have no real chance of curing it. You can help by going to see the film, we need better awareness to promote funding into research as well as donating via the Unrest website.

PS I hope you found me ok, this is now the new domain address for Weaving Heart

The suicide rate for people with ME is nearly seven times higher than the so-called normal population (see here).

For us living with ME this isn’t surprising. Right now I’d love a day where climbing the stairs doesn’t feel like climbing a mountain and this is every day, day in, day out.

So as you may have gathered I’m feeling pretty sh**e right now.

About five years ago, after my diagnosis was confirmed by a consultant, who threw in fibromyalgia for good measure, I started on some pain meds. One of those was pregabalin (aka Lyrica), a medication that’s prescribed for anxiety and seizures but is also pretty good for pain. At one point I was on 600mg daily but after having reduced very slowly I took my last dose a few days ago.

It’s a pretty nasty drug by some accounts; hailed as the new wonder drug, it has become apparent that it can be abused as well as being found to essentially cause brain damage (see here – the research refers to gabapentin, the precursor to pregabalin and it is believed that the research applies to both).﻿

For me, it worked really well at first, but like most of these things, my soreness gradually returned and as I had also gained a whole heap of weight on it, I decided enough was enough and agreed with my GP to come off it. It’s not a drug you can stop abruptly, there’s the risk of seizures and some other pretty unpleasant unwanted effects if you do. I found a group in Facebook (here), followed their guidelines and reduced gradually without any major discomfort.

Now I’m off! I am feeling a bit rough now, but I don’t know if it’s due to this or it’s just a bad few days as it feels like exactly ME.

So to cheer myself up here is a list of things I’m absolutely loving right now

1. Ok, let’s get the cheese over and done with: top of the list has to be Mr Weaving Heart. It’s rotten for him when I’m really unwell, I’m no fun as even speaking is pretty much ruled out and I’m a stubborn old thing too and will insist on doing stuff when I really should be letting him take care of it all. He’s even taken to dosing me with Smarties! I have a pill box thing, as I was getting into bother with forgetting whether or not I’d taken doses so he fills this every night, now with added chocolate as he thinks I deserve a treat. How lovely is that?

2. My knitting: I’m brioching. It’s fab and I adore the smooshy, squidgy fabric it makes. What helps is I’m using some merino/cashmere/nylon from Qing Fiber which must be the softest bounciest yarn ever.

3. This stitching: it’s a design by Ink Circles called Damask Square, and is my ‘easy’ (ha!) cross stitching project. I’m sewing 2 over 2 on 28 count grey Irish linen, making it the same as 14 count Aida so nice and big but oh so elegant. The thread is overdyed cotton floss from Weeks Dyeworks in amber and is such a good contrast with the smokey coloured background. The texture, which I can’t really capture by photo, is perfect.

4. I’ve just finished reading an entire 16 book series by Robin Hobb; similar to Game of Thrones, it’s based in a fantasy world with medieval overtones and fabulous characters. You know how you fall in love with certain characters and storylines? Well I’m still in that, thinking about them and coming to terms with the fact that most of the rest of the world has no idea of the adventure I’ve just been on. For those of you in the know, Fitz, the Fool and Nighteyes have my heart forever.

5. Flapjack: I’m not up to eating much but could manage an entire bus load of this gorgeous sticky, sugary, oaty loveliness.